A little knowledge is a dangerous thing

It may really be in my best interests to stay away from my computer sometimes.

I have a Ph.D. in the life sciences, although as the years away from the lab go on, I am no longer a practicing scientist. But the research skills are still something I use in my everyday profession, and have only been honed by access to internet tools that didn't even exist back in my actual scientist days.

And as anyone who knows me knows well, I read very, very fast. In real life, it makes me a total book club nerd. It makes me a difficult person for whom to buy books as a present, because odds are good I've already read it. It also allows me to be kind of lazy, because I can catch up on documents at the last minute.

Combined, these skills lend themselves naturally to trying to understand everything I can about Smith Lemli Opitz. As well as perinatal palliative and hospice care.

Bad idea. I am now back to feeling pretty damn depressed.

I had actually skimmed much of the primary literature previously - such a rare disease, there's not much of it! But it's something else entirely when you're looking at the primary literature to reaffirm what you already know, what experts have already told you: Harper has a severe case of SLOS and in the cold, hard world of published literature, every case study that matches hers ends in infant death.

Nothing new, of course. Heck, I talked all about that in the previous blog post.

But then I started reading about perinatal hospice. And some support groups boards about dealing with the death of a baby.

No matter it's the right thing to do, no matter whether it's the best outcome, no matter if it's the only outcome, it is devastatingly, soul crushingly sad. So much so that "sad" seems like an incredibly inadequate word.

In fact this entire thesaurus entry barely scratches the surface: bereaved, bitter, blue, cheerless, dejected, despairing, despondent, disconsolate,dismal, distressed, doleful, down, down in dumps, down in mouth, downcast, forlorn,gloomy, glum, grief-stricken, grieved, heartbroken, heartsick, heavyhearted, hurting, indoldrums, in grief, in the dumps, languishing, low, low-spirited, lugubrious, melancholy,morbid, morose, mournful, out of sorts, pensive, pessimistic, sick at heart, somber,sorrowful, sorry, troubled, weeping, wistful, woebegone

I don't want to give myself false hope that Harper will get better. PubMed is like an icy shower that prevents that from happening. And, the truth is, that even if the chances of her living long were not incredibly slim, even her best case outcome is not a good one.

But there is apparently some mother's instinct that will only allow the peaceful acceptance of a child's mortality sit tranquilly for so long, before you start to viscerally reject it, like an invading pathogen.

So while I'm intellectually girding my loins for what's to come, and finding comfort during the sunny hours of the day, as night comes I feel breathless with the sorrow of it all.

How can life possibly be so unfair to our little one?

Fuck you, Punnett Square.